Monthly Archives: December 2008

Life, and the challenges thrown at us, seem to keep ratcheting up lately. I sit here trying to pull my thoughts together, and find that I am somewhere between dizzy and numb.

Christmas Eve was wonderful, with Genevieve offering to spend the night since her children went ahead of her to the Philippines two weeks ago. What a blessing to be able to do all the things a busy elf needs to do without worrying about neglecting Abbie!

Christmas stars still twinkled (along with the outside lights we forgot to turn off) as we tried to put Abbie in her jogging stroller to take her into the living room, the Christmas tree and her waiting brothers. She was having none of it. We quickly changed plans and just carried her to the couch.

I warned the boys, now all old enough to have just asked for money from Santa, that they would be spending most of the morning as Abbie’s helpers, since she outnumbered them in presents ten to one. She loved digging into her stocking to find gloves with little faces on the fingers, a scarf and matching hat and a new toothbrush. And, she eagerly opened her presents. All the while however, her heart rate was hovering at 170…very, very high.

Before we could get to all of her yuletide bounty, the princess fell asleep. Her heart rate didn’t drop below 150, though. I was beginning to get troubled, recalling the screaming I’d elicited the day before just putting in a feeding tube — something she normally doesn’t even notice, let alone complain about.

By 5pm, having tried everything to get her comfortable and bring her heart rate down, we were on the phone with the on-call pediatrician, nodding as he advised us to go to the ER. I was thinking UTI, or something in her belly…actually, I was hoping that was the problem since that is on the “easy” end of the spectrum.

Nope. The urine culture came back clean. She didn’t complain as the doc examined her belly. Her fever wasn’t breaking through the meds we’d given her for pain. She didn’t even really look “sick”. Just that darn heart rate, which could just be a sign of pain. But, since we’d ruled out her midsection, folks started looking south, towards the Great Pink Hinterlands of Abbie’s legs.

“There’s a possibility, given the weakness of her bones and the weight of the casts that she may have fractured her femurs higher up.”

Oh, please….God, no, not that.

Ray ran into Dr. D., one of our orthopedic surgeons, in the hallway. Having been at the hospital until midnight on Christmas Eve, he was just finishing up another long day. Note to self: Thank the Lord I am not a surgeon, and be grateful to those who are!

Calm, Rational, I-could-be-a-doctor-by-now Mom asked, “If there are more fractures, what are the options?”

“Back into a spica (body) cast” was the answer I anticipated and got.

Dr. D. exited, right along with Rational Mom. Broken, Scared, Overwhelmed Mom sat back down and resumed pleading. “Please God, I know somehow we will make it through whatever comes, but please….not this again!”

The Xray tech made her second visit to Abbie to get a better picture of the femurs. And then we waited…

Thankfully, they had a TV on the wall of the room we were in. Amazingly, Abbie was watching it. “Home Alone” was on, and she was getting quite a kick out of “Crazy Kevin” and his antics. Her concentration, vision, and smiles gave my flagging spirit some reinforcement as the waiting continued.

The doc walked in with the only Christmas present I wanted: no new fractures! At this point it was kind of a puzzle, with the clearest answer being that her chest, which looked sort of junky on Xray, was brewing an infection. The doctor mused about admitting her and starting IV antibiotics. I gently countered with, “Isn’t there something else we can do?”

Something else won out: a shot of Rocephin in each thigh, and Gtube antibiotics and we were on our way. Home. What a blessing!

My parents arrived on 12/26 to find us rather strung out, but hanging in there. We were excited to spend time together, but didn’t really plan on doing it all by candlelight. Around 7:30 our whole island lost power. The pioneer lifestyle is fun for boys, but not for fragile little girls…or actually, not for their mommies.

Radio reports said it would be 12 hours at least, so we settled in for the night. I do not make a good pulse-oximeter, but with Abbie having something going on in her chest, it wasn’t as if I could just tuck her in and kiss her goodnight. I absolutely HATE the beep-beep-beep of an alarming pulse-ox, but I sure missed it last night. I had to trust my ears and eyes all night. By morning, when the power came back on, I was officially ready for the looney bin. Sleep deprivation creates insanity as quickly as raising teenagers does!

But, I’m rested now and Abbie is much, much better. This evening my mom and I were putting her to bed and talking about her cousin, Cooper. His 6th birthday is coming up in January. I told Abbie, “That Cooper, he keeps trying to catch you…he’s going to be six…but then, WHAM, you have another birthday and get really far ahead of him again.”

She grinned the biggest grin my mom has ever gotten to see. What a gift! As I type she is smiling in her dreams…sometimes she even laughs. I pray that one day soon she can find the same joy and freedom in her waking hours.

I want to balance what feels like a “whah, whah, whah” update with an amazing thing that happened this week. Ray called and told me to open my email because he’d forwarded something to me. His voice sounded strange, so I got nervous.

Once I read the forwarded email, my voice got funny, too. Tears will do that do you. A group of folks who work for him wrote : We decided that we wanted to do something for you for Christmas in a little different way…….we have purchased a gift card for Tiffany at the Kahala Spa. It waits for her at the Boutique. It will get her their special Kala Ko”iko”I LomiLomi

Can you believe that???

As scary as it gets, God’s assurance is greater. As hard as it gets, God’s power is stronger. As sad as it gets, God’s promises are sweeter. And, as lonely as it can feel, God’s love is unfailing.

The surprising thing remains…for here and now, He does all of this through people. I know I will die with a look of astonishment still on my face, and my first word to my Creator will be “Wow!”

Um….apparently someone neglected to tell Abbie that you can’t hop out of bed with two huge casts on.

Last night she began sitting herself up and wriggling, as if to free herself. Today Genevieve noticed her raising and moving her right leg. Funny, WE can’t move that leg without vigorous, hearty protests from our girl…but on her own, it’s no problem. I think she was enjoying moving about, standing up, being on hands and knees, wheeling around in a stroller as much as we were (probably more). Her mind continues to tell her to GET UP — I love that, but it is heartbreaking to watch her hit the wall, the big pink fiberglass wall, that keeps her restrained right now.

I was going to write about how much better her pain level is, but I was delayed in posting by a huge meltdown. I can’t tell you what it does to me to have her crying inconsolably. I can’t giver her the meds fast enough. I talked to the surgeon today, who felt that we should be able to taper down the Tylenol with codeine. We have somewhat, but when those cries begin, I don’t care about anything but getting her comfortable. The surgeon feels that we will take the casts off on Jan. 13. Not exactly around the corner, but having a date makes it seem closer!

As she was whimpering, I put my hands over her knees and prayed for God to send the power of all the prayers being lifted for Abbie. The next moment she began crying loudly, and her knees got hot. It was strange…no other part of her cast was hot, just the part over her fractures. I don’t understand it, but I do believe that in that moment each of you were standing there with us. If nothing else, it helped this mom not feel so alone and overwhelmed.

I walked into the bathroom tonight, looked into the mirror and realized that at this hour eighteen years ago I was in labor with my first child. I was young, and had not a clue about what I was getting myself into. It’s amazing Chase survived me. In that mirror I saw unknowing youth that had been replaced with a few wisps of gray and some hard-earned wisdom. I still can’t believe that tomorrow I will be the parent of an “adult” (please, note the quotations!). Does anything change us more than our children? Perhaps only our Father.

I pray that in the silent of the night, anticipation fills your heart — Emmanuel is coming. God is ever with us.

After a very difficult weekend it seems that things may be calming down for Miss Abbie. We gave her Tylenol with codeine very four hours through Sunday evening, just to try to stay ahead of the pain. Sometimes it worked, sometimes (like during diaper changes) it didn’t.

She was able to go all night without an additional dose of pain meds last night, and this morning was resting comfortably while satting 100. What a blessing to not have respiratory issues to deal with right now!

She looked much, much better yesterday evening and was able to have an eye-blink conversation with me. She answered all my questions appropriately, and held her eyes closed for a good long time when I reminded her that Christmas was near and Santa would be coming to her house.

Looking back I realize I spent a good part of the weekend in shock. It was chased away by an intense migraine on Sunday morning. Ray quickly sent me to bed so I would be ready to attend the twins’ championship football game that afternoon.

I made it to the game, but felt like an alien standing in that park…not quite a part of the same world as everyone else there. By the time we were celebrating the championship win, I was woozy and the park was spinning. Kyle drove me home, and back to bed I went.

But, finding later that evening that Abbie was doing much better made me much better as well. We’ll just take this day by day until we get to “Cast Off Day 2″…I’d really never planned on making a sequel to that movie!!

Thank you so much for your prayers..we feel them. Abbie’s eyes light up and she smiles when I remind her that many people are praying for her. Thank you for not letting her be alone in this!

Note: I am posting two updates in one day. Please do not read this one first. Scroll below to “Joyful Days”. God gave us those to get us ready and I want you to know the joy we had this week before you read about how the week concluded.

OK, I know most of you are probably cheating and reading this one first, but I’ll continue anyway…

As I wrote in the previous update (whom all of you compliant ones have already read..way to go!), Abbie had a wonderful week, and by the therapy session on Friday her body was in just amazing condition. Her muscles were so relaxed that we were able to move them any way we wanted with no complaint or resistance from her. It was almost strange, but in a wonderful way.

We got her on her knees, with her elbows resting on a foam square. That was a piece of cake for her, so we rotated the foam square to make it higher. Still not a problem. Our girl was blowing us away with her progress! Then..during a bit of a position change, she came almost up into tall kneeling (which is kind of like standing straight up on your knees). I was behind her, holding her feet, and just saw her bottom kind of shift to the right. When that happened, her knees bent way beyond the 90 degrees she’s been working at. In that moment the screaming began.

It’s not been unusual for Abbie to be uncomfortable after doing something new. So we took her home, crying all the way. After about an hour she calmed down and fell asleep, so it seemed that perhaps it was normal post-rehab soreness.

However, when she awoke from her nap screaming, we changed our minds. Unable to comfort her, we quickly loaded her for the trip to the ER. Ray called ahead and explained the situation, so when we arrived we jogged right in to the trauma room.

Abbie was in the bed where her life was saved, and the physician on duty was the one who resuscitated her. I had not been in that room that day, and felt privileged to be the one stroking her head now.

She was quickly given 2mg of morphine, which only moderately dealt with her pain. Things were not looking good. I already knew the truth, but was desperately hoping that I was somehow wrong.

A hideously painful round of Xrays confirmed my awful suspicions. Both of Abbie’s femurs had been broken during therapy. I thought I might dissolve into a puddle on the floor. I recall turning toward the monitors and just whispering, “God, I know you are good. I cannot see it right know, but I know it.”

The fractures had nothing to do with the surgery, but were rather down lower, just above the knees. In fact, the surgery sites looked great! Abbie’s problem is that because she hasn’t been bearing weight in so long her bones have become very, very weak. Her beautifully relaxed muscles had been deceptive at therapy, giving us signals that her body was ready to do more than it really was.

So, Abbie went into surgery around 9pm to receive 2 pins through each leg, and then new casts from each thigh to foot. This time they are fluorescent pink, as I’ve seen enough purple fiberglass for a lifetime.

The surgery went smoothly. She didn’t have to be intubated, and I asked them not to catheterize her, so they didn’t. She was on room air through the night, with pain meds to keep her comfortable. We had great nurses, so I was able to get a few hours of sleep after we were finally settled around 2:30am.

We were on the way home by 12:30 today. I was amazed that within just twenty hours we’d arrived at the ER, been diagnosed, gotten surgery and casts and been discharged. Thank you, Kapiolani!

Fortunately for us, and unfortunately for his wife and dinner guests, Dr. B. was the ortho on call last night (he did her big surgery). So, his very calm manner and my trust in him help me at least remain vertical. The bad news after the surgery is that he pushed the pins in with his hands…calling her bones “butter…cold butter, but butter.” Yikes.

We will be exploring ways, both nutritional and more aggressive means to increase her bone density.

Right now we are almost too numb to cry. No Christmas shoes. No church on Christmas Eve. Back to square one. But, also I think through these years God has given us the gift of perspective.

Someone commented last night about what a setback this it. Well, yes. But, at the time Abbie was in a room on the floor where the oncology kids are cared for. A place where “setback” means the bone marrow transplant didn’t take, the chemo isn’t working, or the new tumor is inoperable. So, we’ve recieved a two-month bump in the road, not a permanent set back.

And, I know there will be good to come from this. As I looked at her surgery sites, and saw comparatively good bone there (on the Abbie scale), I wondered whether this new aggravation at the other end of her femurs may prompt them to create more bone there. “Perhaps” was the answer from Dr. D., the ortho on call today who also did Abbie’s surgery. One of Abbie’s PTs said, “Bone is always the strongest where it’s been broken.” Sort of like hearts, it seems to me.

Having JUST gotten to the point of having knees bend enough to use footplates and sit in a car seat like any other kid, I was worried about losing that. Dr. D. made my day this morning by saying, “This injury may even give her MORE knee flexion (bending).

So, today when speaking to the PT who was in the session on Friday, I recited all these “Good Will Come” affirmations. She said, “You are always so positive!” I said, “Look, it’s just that we’re in a place where it’s ‘be positive or die.'” So, we are choosing to move forward with hope.

Are we sad? Beyond words. Are we fatigued? Body, mind, and spirit. Is it unbearable to watch your daughter suffer? You know that answer. Are we relying on your prayers? Every second and for every breath.

On that note, here’s a prayer list:

1. Pain abatement. She is in excruciating pain. Even sliding diapers under her bottom is torture for her.

2. Quick healing. The sooner we can get back to work, the happier we will all be.

3. Bone density. This is the long term solution. I asked the surgeon how we could get her bones stronger. “Weight bearing” was the reply. But, how to safely bear weight with fragile bones. That’s the conundrum. We don’t want this to become a vicious cycle…we try to bear weight, she fractures fragile bones, which we then have to cast, making them more fragile.

4. Stamina, for all of us.

Thank you for surrounding us with love and prayers. Times like this remind me that all of this is so much bigger then me, and I really cannot handle it on my own.

So many good things have happened this week, and I actually got pictures of most of them!

On Monday we got Abbie on her hands and knees at therapy. It took five of us: one at each leg, one at each arm, and one helping her with her head. That should make the reason why I don’t have a picture very obvious! She did better than we had hoped, and was willing to allow her knees to be pulled up to about 100 degrees, while bearing some weight on them. We had a giant magenta lycra sling under her belly and hips to help support her weight as well.

On Tuesday I put her up on her potty chair for the first time in many months. After about thirty seconds there was a lot of…uh…production! I was so surprised, but Abbie was acting like “Helloooo, I’m ready for more than you think I am!” I was so happy I actually did take a picture of the potty and send it to Daddy, but I don’t think I need to publish that one!

Wednesday took us to therapy again, where this time we did some standing. Abbie was pretty sleepy, as it seems like her meds are beginning to affect her more. But, she did well.

We started out at this angle

Then we moved up, and allowed her to bear more weight. Since she hasn’t been standing in a long time her bones are not ready bear all of her weight which is why she is not standing sraight up.

Look at these ankles!! The orthotics are designed to allow her ankle to flex forward while she stands, so they are bending even beyond 90 degrees. Unbelievable!

Gotta show off Auntie Genevieve’s work. I think Abbie’s had four different nail colors in the past 10 days!

Thursday was a great day! Abbie was able to get an hour of standing done, in three separate sessions. But, the highlight of the day was a tea party with the Cheshire girls (and baby boy).

Abbie was tired when they arrived, but still really enjoyed exchanging presents! She recieved 2 beautiful dresses.

One matched Christa’s dress

The second was a red one that both the girls have worn. They gave matching reports: “It’s itchy!!!” So, perhaps Abbie will wear an undershirt, but it’s too pretty not to wear!

The real squeals came (from me) when we opened the box containing a pair of Christmas shoes!!!

We then let Abbie go rest while we enjoyed Katrina’s homemade scones and some fruit. Christa sat down at the piano, and seeing her profile, with her hair covering her face made me think of little Abbie, who would lead me by the wrist to the couch, say “You sit there,” and then climb up to the piano bench and plunk out a masterpiece for me.

As Christa and Katrina sang and danced for us, I felt that I was seeing what angels may look like. Radiant girls, dressed in white, raising pure, innocent voices to God. Amazing…at the time I didn’t know how much I would need that memory the next day.

They then went in to sing to to Abbie, who loved it.

That evening I got Abbie into an umbrella type stroller I’d borrowed, because I tried to change her wheelchair footplates myself. Brilliant move. All I succeeded in doing was making it pretty much unusable. But, placing her in that stroller was yet another exciting step because her knees bent beautifully and her feet sat properly on the footplates. For the first time since she was injured!

I wheeled her all over the house showing her off to her brothers. She sat in front of the Christmas tree for a long time, admiring the lights and soaking in time with Kyle.

As Friday morning began, I found myself rushing out of the house to make it to Matt’s Christmas performance. During the drive I thought, “Wow..two months ago tomorrow we were in surgery. I can’t believe how far she’s come. This is so FUN..watching her actually be able to accomplish things and experience a cooperative body.”

It seemed at the time that we were on the expressway, speeding toward all our goals.

In the blink of an eye, that all changed. But as our world crumbled yet again, I was buoyed by all the precious and exciting moments of this week.

I had a blast on Thursday afternoon shoe-shopping for Miss Abbie. The weather was so terrible that I didn’t want to take Abbie out in it, so I sketched the length of her foot on a piece of paper and headed to town.

Turned out all the shoes I’d been drooling over at Sports Authority were for older girls, sizes 3 and up. Rats. So, I left there and went to the New Balance store, knowing I would need wide shoes. The clerk helped me size the drawing, and we figured she would need a 13 or 13 1/2 depending on the orthotics. She had one style in each. The 13 was pink with velcro straps, while the 13 1/2 was a purple lace-up style. I’d heard velcro works better with orthotics, but when I got home I was concerned to see that both pairs looked tremendously too big for her feet.

Matt came in to give his expert opinion, and told me that the purple pair was an absolute must, no question. Abbie obviously agreed. I explained to both of my fashion mavens that we needed to choose the pair that FIT, not the pair we thought was the prettiest.

The next day I took both pairs to therapy, along with a pair of size 12s I had at home, since the other two looked so much too big. Abbie spent close to an hour on a bolster swing — you can think of it like riding a horse. Towards the end of the session the therapist, Jayna, traded places with me so I could swing my girl. It quickly became obvious that, just like always, the higher we went the more Abbie liked it.

Our talented orthotist, Kai Newton, arrived with a pair of orthotics that looked MUCH different than I thought they would. I’d expected the ones that go almost to the knee and are quite noticeable. Abbie’s have a flexible sock-like cushion, custom-molded to her foot, that goes on first. Then we put the clear, somewhat flexible orthotic over it. It only comes up a few inches above her ankle. Pink straps completed the perfection.

We tried the pink shoes on first, but they didn’t fit so well. So, we unlaced the purple ones and slipped them on. Abbie cried. I told her, “This is like all the things we’ve done for the first time after your cast — at first it may hurt a little, or be scary, but in no time this won’t bother you at all.”

The shoes fit perfectly – so, Matt and Abbie got their wish! Here are Abbie’s first pair of tennis shoes in four years:

I cried. Jayna was overwhelmed. She asked me “Do you still have that Nemo?” She was referring to a stuffed Nemo that we placed under Abbie’s feet in the PICU. Jayna sat her up in a chair before her eyes were even open, and when Abbie followed our instructions to go find the Nemo below her feet with her heels, Jayna become one of our first advocates in our “Abbie Is In There” campaign. Her asking about Nemo was validating for both of us just how far we have come, and how much hope and progress remain to be realized.

Here’s a picture of Kai. He was surprised I wanted a photo of him, but he does such an amazing job, and his efforts truly improve Abbie’s quality of life. If you’re on Oahu and need orthotics, call him at Advanced Prosthetics!

Daddy came home from a week in Nashville to find his girl up in her wheelchair with big ol’ purple shoes that were just MADE for walking. And, now when we put them on we get smiles instead of tears…more progress!

The angle of this picture makes her feet look even bigger. I don’t watch much TV, but for some reason I’ve seen the “King of Queens” episode about the “big hand portrait” more than once. This picture made me think of that and laugh. We’ll be changing out her foot plates soon — we’d put ones on to accommodate knees that didn’t bend. Now, they are just getting in the way of knees that do bend and feet that want to be flat — hurrah!

It continues to rain, fiercely at times — my apologies to those here on vacation, what a bummer — but there is so much sunshine in our house that the grey outside has no chance of pressing in. These are good days!

This has the potential to be a long update, so I am going to break it up into three parts. The first, most important segment is about Abbie’s first week of rehab, while the second and third parts are especially pertinent to other brain injury families – so I hope you’ll read them when you have time.

Part I: Tears

We began post-op PT last Wednesday mostly just doing measurements and some sitting. Nothing too challenging, but we still got a few complaints when we didn’t support her knees well enough.

The next morning I decided to lay her on her tummy across a ball, to allow her knees to bend. We had some serious tears, and they weren’t all coming from Abbie. It is so very, very hard to watch her suffer, even for a good cause. It made the whole day heartbreaking for me, and took me to some very painful places mentally.

On Friday I had to miss PT to go to the dentist. Ray went to check on Abbie and Genevieve and called to report that he found both of them in tears. Ugh. By the time I returned to the hospital to pick them up, all was well, and I thought perhaps the dentist appointment had been a gift, to spare my heart of more than it could’ve handled that day.

Saturday was a bit better, and slowly I could see that things were getting easier each day. I told Abbie that this was just a process we were going to have to work through, so that she could do all the things she was excited about before the surgery: riding a bike, riding a horse, walking down the hall. I reminded her that it is safe now to move her body, as a lot of her resistance didn’t seem to be coming from pain but from fear of pain.

Monday’s PT was a HUGE improvement. She sat on a bench, with her knees beautifully bent and her feet flat on the floor. It has been four years since she was able to do that with ease. To pass the time on the bench Abbie dressed up a Mr. and Mrs. Potato Head by selecting all the various parts. No surprise that they turned out very colorfully: purple lips, blue eyelashes, pink ears, green nose…she loved it!

Yesterday I was able to lay her on that same ball with absolutely NO complaining..in fact she enjoyed it. Maria came to work with her and was very encouraged, which rubbed off on me.

At today’s PT session she was again sitting on a bench, but one that was topped with a rocking wedge. Her feet were placed on a scooter board. So, she would rock side to side, with knees at 90 degrees and feet flat. Then, we would stop and ask her to push the scooter board out. Once she figured out what we wanted her to do, she was very good at it. I was thrilled to see her USE her new legs. And, not one peep of discomfort. I am amazed at how quickly things are getting easier for Abbie. Friday’s appointment will included the fitting of her new foot braces, so I am thinking about going directly to Sports Authority afterward, because I was eyeing all the pink Nike shoes with anticipation on Monday…can’t wait!!Part II: An Answer from the Stars

While Abbie was in the hospital a man I worked for years ago was in town, and part of his itinerary included speaking at a breakfast Ray would be attending. Back when I knew him he was a lieutenant colonel; now he is a two-star general serving as the Deputy Surgeon General of the Army. “Take a shot!” I thought. So, I did.

I drafted a letter to Major General Rubenstein explaining my interest in brain injuries, which are now the “signature injury” of our current wars, and imploring him to direct military research funds to defining and defeating the Nogo protein and other neurite outgrowth inhibitors. I included a number of abstracts from completed research, signed my name, prayed, and gave the packet to Ray to hand deliver.

Given the overwhelming demands of his job, I would have been very content with an email saying “Got it, will look into it.” I received MUCH more. I was humbled and overwhelmed that he took so much time to gather information, and I want to share some of the content so that other brain injury families can receive the same encouragement I did:I have consulted with subject matter experts at the US Army MedicalResearch and Materiel Command and the Telemedicine and AdvancedTechnology Research Center (TATRC). There are several related projectsunderway in this line of research.

The Christopher Reeve Foundation (CRF) is working on one projectwith the “North American Clinical Trials Network (NACTN).” In theresearch application submitted to the Department of Defense in September2006, the CRF proposed that NACTN would evaluate a new treatment forspinal cord injury: the neutralization of the axonal regenerationinhibiting molecule, Nogo, by means of an intrathecal infusion of a Nogoantibody. This proposal is on hold until Novartis receives FDA approvalto conduct a trial of its anti-Nogo antibody in the United States. Inthe meantime, however, Novartis has expanded its Phase I clinical trialfrom the European sites to several Canadian clinical sites, includingthe University of Toronto.

The following related projects from the Northern CaliforniaInstitute for Research and Education do not explicitly deal withMyelin-Associated Glycoprotein (MAG) research, but they all touchcomponents of related pathways:

There are a multitude of pathways involved and while scientists tryto find the golden target, it becomes increasingly apparent thatcombination therapies driven towards multiple parts of the centralnervous system inflammatory and apoptotic pathways will likely berequired. There has been some promising work using an antibody in a ratanimal model by University of Pennsylvania and GlaxoSmithKline (enclosedabstract), but the challenge is trying to get a molecule so complexthrough the blood brain barrier and into the central nervous system.Dr. Mike Kubek at the Indiana University of Pennsylvania has developed ananotechnology for moving proteins into the central nervous system viathe nasal epithelium that might hold promise.

TATRC also has a full proposal from Dr. Song Li at UC-Berkeley thatuses the phosphodiesterase-4 inhibitor rolipram, which has been shown toovercome inhibitors of regeneration (including myelin breakdownproducts) and promote axonal regrowth; and chondroitinase ABC, whichdegrades chondroitin sulfate proteoglycans (CSPGs). CSPGs were alsoincluded in the list of articles you submitted with your letter.

Additionally, TATRC has a Congressional project with the CitizensUnited for Research in Epilepsy (CURE) Foundation, which includesmultiple investigator-initiated studies for the prevention ofpost-traumatic epilepsy, including the prevention of astrogliosis(inflammation of brain cells).

Finally, there were several discussions and research postersrelated to MAG research at the Society for Neuroscience conference. Dr.Ken Curley and Dr. Brenda Bart-Knauer, TATRC, spoke with Dr. Kubek atdifferent times during this conference. Dr. Kubek has worked with CUREin the past on post-traumatic epilepsy and has submitted a grantproposal for the nanoparticle delivery of peptide drugs to the brain.

He the ended the email with something that brought a huge smile to my face:

I hope this provides some insight on the work that is being done inthis line of research and gives you some comfort in your day-to-daychallenges. I’m reminded about the daily exhortation of my very firstbattalion commander. He would remind us to “never give in, never giveup, never, never, never.” Your efforts are strikingly similar. Hooah!

I smiled because hanging on Abbie’s whiteboard is a little, square, black magnet with simple white letters on it — words that sum up our journey: “Never, Never, Never Give Up!”Part III:Out of Left Field

I got a call yesterday that answered some of the deepest cries of my heart — cries for guidance and wisdom. Answers to questions that have been lingering, almost taunting us. Why can’t we get Abbie’s iron levels up to normal? Why are the basal ganglia (involved in motor control) always so affected by brain injury? What should I be feeding her?

You wouldn’t think there’d be a common answer to all those questions, but there is, and it revolves around a trace, non-magnetic metal called manganese.

Here’s what I learned from that call:

While manganese is important in trace amounts for metabolic functions, toxic levels produce symptoms that can mimic autism and Parkinson’s disease. This has been documented in literature as far back as 1819.

Excess manganese also inhibits the absorption of iron. You can think of these two elements like a teeter-totter. If not in balance, you can’t get the iron in to the body.

This would fit Abbie’s clinical picture, so I was very interested. But, then came a clincher.

Once excess manganese enters the brain the place it likes to settle is the basal ganglia, specifically the globus paladii. Of course, I hit Google hard last night, and found this remarkable quote:

It caught my attention because on Abbie’s recent MRI her globus palladii were indeed “hyperintense”. Now, the condition of her brain is primarily the result of an injury, but given that the manganese issue fits her clinical profile, I think it could be a complicating factor in her recovery.

Here are a couple links for interesting articles about manganese, and particularly about how soy formula is an especially potent delivery vehicle for toxic amounts of it.

I was relieved to know that I’d been avoiding soy in Abbie’s diet for a long time. But then, I caught the next punch square in the jaw.

I do make all of Abbie’s food, but when I am running short on time, sometimes I use baby food in the mix. Turns out that baby food can have ENORMOUS amounts of manganese added to it. When one physician who is helping children affected by manganese toxicity tried to find out how much manganese is in baby food she ran into an interesting situation.

She looked on the jars to find that where an amount should be listed for manganese, there was instead a tilde (asterisk-looking thing). She called the FDA to find out what this meant, and was told, “That means the manufacturer knows how much is in there, but has opted not to report that to us.” What???

So, I have to stay away from baby food now as well. To put this into perspective, the maximum amount of manganese a child should ingest per day is 0.5mg. 100g of baby food with turkey meat has 30 mg of manganese, while baby food creamed peaches has over 15mg. And, without proper labelling, it is impossible to tell what how much manganese is in each different baby food. I looked at the canned nutrition we had given Abbie (Compleat Pediatric), to find that it had .5mg of manganese in each can. She was getting several a day. One other place where there is risk of excess manganese is in supplements: joint formulas including glucosamine and chondroitin often have large amounts of manganese added, so you may want to check the levels if you are using supplements like these.

I just received the “anti-manganese” diet that a physician treating children with manganese-related neurological conditions has developed. I have been CRAVING dietary advice ever since I took Abbie off of her raw milk diet. I am so very thankful to have some guidance. We will start it tomorrow. The physician has seen dramatic improvements in each and every child using the diet in 1-3 months. I am hoping it will help Abbie as well. The changes in the treated children have been dramatic, but I am not getting my hopes up too high, focusing instead on just trying to solve the iron issue.

If you are interested in looking at the diet, I will be happy to email it to you. Just send me a note at varasix@aol.com.

So, it has been an amazing week of progress around here. Abbie is exceeding our expectations daily, and looking beautiful doing it. I feel that my Christmas came early, with gifts of information and insight beyond what I could have ever asked for. And, this past week I’ve run into so many people who’ve told me they are still keeping up with Abbie. You must know that especially on the hard days, when tears fall, that is the rope keeping me hanging onto the side of the mountain. Thank you!

Those were the words of the orthopedic surgeon today at our follow-up appointment, after he looked at the Xrays we had just taken. “She is totally healed from the surgery…treat her now as if she didn’t even have a surgery. Time to get moving!”

Okey-Dokey!!!

I am thrilled at how well her bones healed, and am so very excited to get to the fun stuff now. Jayna, one of the PTs who will be helping us “get moving” was at the appointment with us today. We filled the waiting time by excitedly building a list of things Abbie is going to be able to work on that she either hasn’t been able to do in a long time, or has not been able to do since she was injured:

* Getting on her hands and knees* Working on sit-to-stand transitions* Walking down the hall in the Walkable* Working on flexion beyond ninety degrees for her ankles and knees.

And, the very best…asking Jayna what Dr. B. meant when he said he’d ordered “DAFOs” for Abbie’s feet instead of “AFOs” (the type of foot splints we’ve always used.) She explained that DAFOs are molded very closely to the feet and legs so that they fit inside SHOES!!! (They also let Abbie move her foot up and down, but that wasn’t what thrilled me, sorry to admit.)

My sweet girl has been stuck with clunky fiberglass boots, albeit with cute patterns on them, for all these years. Now we can go shoe shopping again!!! To truly appreciate this you must know that Abbie picked out her first pair of shoes at 9 months old, when she grabbed a pair of high top pink sandals with flowers on them and wouldn’t let go. She was also the biggest shoe stealer, always clomping around the house in everyone else’s shoes, finding special joy in high heels. I know I should be focused on functional improvements and physical gains, but I have to say that finding out about the shoes brought me the most joy today — pretty shoes with a Christmas dress is making me giggle with anticipation. God is so good!

Jayna was the first PT who worked with Abbie — we met her in the ICU. She was among the first to support our belief that Abbie was “in there” and called Speech Therapy to get Abbie working with switches even before her eyes were open. I told her this is the first “do-over” we’ve gotten. She saw, along with us, Abbie’s legs and feet transform the the well-toned, flexible ones belonging to an active toddler, to the restricted, misshapen, unusable ones belonging to a brave, but injured, warrior. Jayna spent 3 years in Japan and recently returned, so it seems a full-circle moment to me that she is with us as we begin this journey from “Start” again, with beautiful, flexible, healthy legs. And this time, things are only going to get better.